Determinants of Ease of Care Giving
of
Young Children with Cerebral Palsy
Lisa Chiarello, PT, PhD, PCS, Drexel University
Kate Randall, MS, University of Western Ontario
Doreen Bartlett, PT, PhD, University of Western Ontario
Robert Palisano, PT, ScD, FAPTA, Drexel University
Funded by CIHR & NIDRR
Objective



Ease of care giving > level of difficulty in assisting a
child to perform self-care activities
Ease of care giving > important outcome of familycentered services for young children with cerebral
palsy
To identify the child, family, and service
determinants that are associated with ease of care
giving of young children with cerebral palsy
– Implications for practice > enable health care
professionals to provide evidence-based
interventions and support children and families
Setting and Participants


4 regions in the United States and 6 provinces in Canada
Convenience sample of 387 children with CP and parents
– Children
 215 boys, 172 girls
 18-60 months of age
– Mean age 3y 2mo, SD 11mo
 Varied gross motor abilities across all GMFCS levels
– Parents
 94% mothers
Methods

Cohort study
– Secondary data analysis


Data collected in children’s homes or therapy
clinics
3 data collection sessions over a one-year period
Measures
Child Factors: Beginning of study
Parent Completed
 Adaptive Behavior: Early Coping Inventory
 Associated Conditions & Co-morbidities: Child Health Conditions
Questionnaire
 Endurance: Early Activity Scale for Endurance
Therapist Administered
 Spasticity: Modified Ashworth Scale
 Quality of Movement: Gross Motor Performance Measure
 Balance: Early Clinical Assessment of Balance
 Muscle Strength: Functional Strength Assessment
 Range of Motion: Spinal Alignment and Range of Motion Measure
 Distribution of Involvement
 Gross Motor Function: Gross Motor Function Classification System
Measures
Parent Completed
Family Factors Demographics: Beginning of study

Age & education of parent

Total number of children & adults in household
Family Factors: Middle of study
 Family Expectations of Child: Questionnaire

Family Supports: Family Support Scale
Service Factors: Middle of study: Questionnaire

Amount of Physical & Occupational Therapy Services
 Family-centeredness of services

Coordination of services

Extent services meeting child needs

Focus of services on activity, self-care, & environment
Measures: Outcome
Parent Completed: At End of Study
Ease of Caregiving: Supplement to the Child
Engagement in Daily Life Measure
 12 items
 Example: How difficult is it for you to help your
child eat?
 5-point likert scale:
 1 = very difficult to 5 = no help is needed
Data Analysis

Sequential multiple linear regression
– Calculated Pearson’s correlations between Ease of
Caregiving and child, family, & service factors



All child factors correlated (moderate to high)
Family expectations only family factor correlated (moderate)
All service variables except family-centeredness correlated
(low to moderate)
– Calculated intercorrelations among predictors


Multi-collinearity (r≥0.80)
GMFCS highly related to balance & muscle strength
Results
GMFCS Levels
I
II
III
IV
V
Total
Ease of Caregiving
x (sd)
4.4 (0.4)
3.9 (0.6)
3.9 (0.5)
3.4 (0.7)
3.0 (0.7)
3.8 (0.8)
Median
(range)
4.5
(3.0 – 5.0)
3.9
(2.8 – 4.6)
4.0
(2.8 – 4.8)
3.5
(2.1 – 4.8)
3.1
(1.2 – 4.3)
4.0
(1.2 – 5.0)
Results




Child factor model accounted for 55% of the variance of
ease of care giving (p<0.001)
Addition of one family factor added 1% (p<0.02)
Addition of service factors added an additional 1% (p<0.01)
Final model > significant variables
– Gross motor ability
(β= -0.35)
– Impact of health conditions (β= -0.17)
– Spasticity
(β= -0.14)
– Family expectations
(β= 0.09)
– Coordination of services
(β= 0.09)
– Needs being met
(β= 0.09)
Implications for Practice:
To Support Ease of Caregiving
for the Family
 Optimize gross motor abilities
Enhance balance
 Prevent secondary impairments
 Promote health: minimize the impact of health conditions
 Manage spasticity
 Support families in encouraging children to fully
participate to their abilities in self-care
 Collaborate with others and coordinate care
 Address family priorities and needs for their child

Questions, Comments,
Thoughts??
[email protected]
http://www.canchild.ca/en/ourresearch/moveplay.asp